Heart to Heart Cards: A Novel, Culturally Tailored, Community-Based Advance Care Planning Tool for Chinese Americans

Abstract

Context: A paucity of literature describes the growing Chinese American community’s end-of-life (EOL) priorities and preferences. Objective: Develop a culturally-tailored advance care planning (ACP) tool to understand the EOL preferences of this underserved minority group. Methods: Informed by the Cultural Appropriateness Theory, the Chinese American Coalition for Compassionate Care (CACCC) developed Heart to Heart (HTH) Cards using a 3-step approach. First, CACCC created and refined a list of bilingual, culturally relevant EOL issues. Next, CACCC organized the EOL issues into a card deck. Finally, CACCC developed a unique playstyle of the cards—the HTH Café. From 2014-2019, CACCC recruited Chinese American volunteers and participants for HTH Cafés. Following each Café, participants completed an anonymous survey describing their sociodemographics, top 3 cards, and café evaluation. Results: The 54 HTH Cards were organized into 4 suits (spiritual, physical, financial/legal, and social). Each card displayed a culturally-tailored EOL issue in English and Chinese. Playstyles included one-on-one and group formats (ie. HTH Café). CACCC volunteers conducted 316 HTH Cafés for 2,267 Chinese American adults. Most participants were female (61.6%), between 18-50 years old (56.7%), lived in California (80.2%) and born in Asia (74.3%). The top priority (25.5%) was “If I’m going to die anyway, I don’t want to be kept alive by machines.” Participants thought the session was pleasant (99.5%) and expressed intent to complete advance directives (86.5%). Conclusion: HTH Cards represents the first, theory-driven, culturally-tailored ACP tool for Chinese Americans. More research is needed to establish its impact on ACP conversations and outcomes.

Nurses’ self-regulation after engaging in end-of-life conversations with advanced cancer patients: a qualitative study

“…The literature has revealed several barriers to the initiation of end-of-life conversations on the part of health care providers, including human factors, time constraints, and challenges in the work environment [ 8 , 9 ]. Various tools for clarifying and documenting patients’ wishes have been implemented worldwide to help health care professionals initiate and organize end-of-life conversations [ 10 , 11 ]. The Heart to Heart Cards Game (HHCG) is a tool developed by the Chinese American Coalition for Compassionate Care based on Go Wish cards under the guidance of cultural appropriateness theory [ 11 ], and previous studies have proven that the HHCG can help nurses initiate end-of-life conversations with cancer patients, thereby improving their understanding of patients’ preferences and leading to improvements in patients’ quality of life [ 12 , 13 ].…”

“…Various tools for clarifying and documenting patients’ wishes have been implemented worldwide to help health care professionals initiate and organize end-of-life conversations [ 10 , 11 ]. The Heart to Heart Cards Game (HHCG) is a tool developed by the Chinese American Coalition for Compassionate Care based on Go Wish cards under the guidance of cultural appropriateness theory [ 11 ], and previous studies have proven that the HHCG can help nurses initiate end-of-life conversations with cancer patients, thereby improving their understanding of patients’ preferences and leading to improvements in patients’ quality of life [ 12 , 13 ]. Similarly, we cannot ignore the fact that the person who must navigate end-of-life conversations is a health care provider.…”

“…Unlike daily conversations focused on events or tasks, end-of-life conversations focus on psychosocial, psychological, and spiritual issues, thereby approaching the patient’s inner self; moreover, discussions of death and dying are inevitable in this context [ 11 – 13 ]. Studies have shown that health care personnel are concerned about causing distress for patients or decreasing their hope, that they feel discomfort when discussing “impolite” or “taboo” topics, and that they lack confidence due to limited training in end-of-life conversations [ 8 , 9 ].…”

Association Between Primary Decision-Maker and Care Intensity Among Patients With Advanced Cancer in Mainland China

“…15,17,24 In the face of serious illness, familial values may lead Chinese patients to defer decision-making to caregivers in an effort to preserve familial harmony. 25,26 However, there has been little research on the relationship between the centrality of familial decision-making and treatment outcomes in China. 15,27,28 We aim to address this gap by examining the relationship between locus of familial decision-making on advanced cancer care in mainland China.…”

Use, usability, and impact of a card-based conversation tool to support communication about end-of-life preferences in residential elder care – a qualitative study of staff experiences

“…In contrast, some tools are developed to support both reflection and interactive discussion about values and preferences for EOL care (e.g. Hello [ 21 ], Heart to Heart [ 22 ], and GoWish cards [ 23 ]). In this study, we use the DöBra cards, the translated and adapted Swedish version of the U.S. English-language GoWish cards, which cover various physical, practical, existential, and social matters of potential importance for guiding EOL care provision [ 24 ].…”